I want to share with everyone the medical journey and fight for quality of life that my little brother Daniel is facing and the many complications and hurdles that he has and is facing along with his most recent set back.
Daniel is a 29 year young man who has been an insulin dependant diabetic since age 2 and in the past couple of years has battled various conditions and illness as a result of this life debilitating disease. Over the past few years Daniel has suffered from diabetic ulcers which ultimately resulted in him loosing his right forefoot back in 2016. As-well as being hospitalized numerous times with infection from the ulcers, he been hospitalized several times with chronic pneumonia and spent many nights and weeks in hospital at any one time. Daniel's journey didn't end there, during one of his many stays in hospital he was also told that he had the onset of kidney disease and diagnosed with diabetic eye disease. Again, during one of his many hospital stays he was diagnosed with a heart condition called cardiomyopathy and told that his kidney function had decreased majorly and that he would need someone to care for him full-time for his best chance of survival. In July 2017 Daniel relocated from Bundaberg to the Gold Coast to live with me and my family so I could care for him full-time and he could receive the much needed care and treatments he needs to survive through the wonderful specialist teams and hospitals between Brisbane and the Gold Coast. Over the coming months Daniel's decreasing kidney function, extremely high blood pressure and his heart condition seen him spend many weeks in hospital and by October 2017 his kidney function was so low that he was started on haemodialysis treatment several times a weeks at the hospital.
Over the past 20 months approximate that Daniel has been receiving haemodialysis treatment here on the Gold Coast, he has spent much time bedbound at home or hospitalized due to his many conditions and his worsening kidney condition. He spends most days nauseated, he suffers from chronic migraines, insomnia and neuropathic nerve pain as well as loss of appetite and vomiting, not to mention he has lost the sight in his right eye to diabetic eye disease. About 16 months ago, he had a fall and broke his left leg (not the right amputated foot) and was either bed or wheelchair bound for quite a few months. As a result of the lack of and poor movement Daniel lost a lot of his muscle tone and found it hard to walk long distances unassisted or without aid so became reliant on the use of a wheelchair most of the time. However, finally about 5 months ago we reached a point, with a little help and encouragement and a bit of exercise, where Daniel finally had the will and was confident enough and felt well enough to get out of the wheelchair for good. Since he has been up and walking again his appetite and sleep have improved and he hasn't felt as nauseated.
Then more recently on the 4th June 2019, whilst Daniel was receiving one of his usual weekly kidney haemodialysis treatments, he suffered at major seizure, only his second ever but this time he didn't wake. He was placed in the Intensive Care Unit (ICU) in what they called a vegetative coma-like state. After numerous tests and scans, they found Daniel to have a bacterial infection that affects the brain, brain stem and the lining of the brain called encephalitis (bacterial meningitis). They found his brain, brain stem and the lining were inflamed and that he had also had a stroke. For days we, Daniel's family and friends sat at his bedside hoping and praying he was going to come back to us or had his body finally given up with all that it was battling. On day 7 came that dreaded meeting with ICU Consultant, the team of Doctors and the Social Worker about where to from here, what would Daniel want, choices and possible outcomes and the offer of support during these horrible times. The chances of him having brain damage or other impairment are a real and likely possibility. Then finally on day 9-10 he showed the signs we had all been waiting for, he started to open his eyes and then he started to breath on his own and was able to squeeze our hand. By day 11 all breathing tubes and machines were removed and he was given his first solid meal since prior to the seizure. Daniel's recovery all seem to be going well but progressing a lot slower than expected. He can talk although he now has a slight speech impairment that may get better over time with therapy, he has some behavioural problems but no problem with memory and he does have use of his limbs but due to his health, him being so unwell and the fact that he has been bedbound for more than 2 weeks he has lost muscle tone in his legs and can no longer walk. He has a physiotherapist that is working with him daily whilst in hospital to try and build up the muscle tone in his legs but he has a long way to go before he could will be on his feet again safely. He also has a new condition which they are yet to diagnose and confirm but basically he is hallucinating all the time and current treatments don't seem to be helping in any way. It's now been 17 days since Daniel suffered from the seizure and it has been 7 days since waking from his vegetative coma-like state and the specialist team have raised concerns over the possibility that the encephalitis may be still present and spreading. They are also checking to see if he now has a seizure disorder such as epilepsy.
I am trying to raise funds to assist with Daniel's road to recovery and help get him home and back to the best quality of life possible by getting him the best care and treatments and therapies available. He has also been placed on the kidney and pancreas transplant list but as he has lost so much weight he now needs to gain approximately 20kg before a transplant can even be considered so he also needs a dietician and physio to work with him on a more regular basis. Funding raised will help cover the costs of the much needed treatments and therapies along with disability aids and medical equipment to help get Daniel back on his feet and back to having the best quality of life he can. Depending on Daniel's progress before he comes home, it may also be necessary for me to obtain a little extra help by obtaining the services of an external service. I am Daniel's 36 year old sister, I am a mother of 3 and I am Daniel's full-time carer. Please help me get Daniel the treatments, therapies and other things he muchly needs to help him back on his feet and to have the best quality of life possible and work towards getting his transplant.